Social work and end-of-life care

Social work is important in end-of-life care

Archive for January 2013

NHS merger proposal that includes patient benefit in anti-competition decision

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Some months ago, I commented on a report of a foreign competition review of hospital mergers and said it would be interesting to see what the UK competition authorities did, faced with a hospital merger. Here is a lawyer’s view of the first one. The Office of Fair Trading looked at a proposed merger between hospital trusts around Bournemouth, decided they were potentially anti-competitive and referred them to the Competition Commission. As with the foreign case that I commented upon, the main concern, reported by the lawyer, were:

It is clear from this first case that the OFT’s chief concern was that the merger would result in diminished choice for patients and commissioning groups and therefore reduce incentives to compete on quality, which would have a detrimental impact on patients using these services.

The OFT identified at least two key parameters for competition between the Trusts:

1 competing to attract patients; and

2 competing for funding from commissioners of NHS services.

What this tells us is that there is a potential, when looking at proposed mergers in the NHS, for someone outside the NHS to look at them and see what the evidence is that patients will benefit, including convenient access, not at what the managers say about how they can save money. This provides a new area where campaigners looking at NHS reorganisations can apply pressure to the healthcare system. No independent body has ever looked before at this kind of evidence.

This is potentially a good counter-balance to financial pressures towards NHS mergers that disadvantage patients, if campaigners can use it.

Here is the link to the report: OFT’s first review of NHS Foundation Trust merger – Lexology.


Written by Malcolm Payne

31 January 2013 at 11:35 am

Advance care planning: basic explanation and British links

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Care planning montageAs promised, some more general material and British links on advance care planning.

Advance care planning (acp) is the general term for helping people to plan for the care they want during the end-of-life phase of their condition. It builds on the idea of advance directives, which tell doctors what their patient wants them not to do, if the patient does not want to be enthusiastically kept alive; nobody can instruct a doctor what treatment to provide, legally it has to be their own professional decision what is in the best interests of the patient.

Link to Capacity, care planning and advance care planning in life limiting illness: A Guide for Health and Social Care Staff from the National End of life care Programme – the best all-round guide for professionals.

Link to the Royal College of Physicians concise guidance Also a good guide, co-published with a lot of relevant organisations, but understandably a bit doctorish in approach.

Link to the latest practical guidance toolkit: Advance Care Planning: it all ADSE up. This dire punning title is based on the mnemonic for the main principles, according to the NEOLCP, of carrying out advance care planning: Ask – Document – Share – Evaluate. I can only imagine that government cuts have led to no money being available for marketing consultancy to the National End of Life Care Programme, which would undoubtedly have squished this naff title, but the content is practical and useful. At the end of this post a link to other useful guidelines.

People in the end-of-life care field (especially in the USA) tend to see acp as mainly concentrating on advance decisions, and decision-making in the last year of life,which nobody can predict, so that’s a bit of a nonsense. Professionals are supposed to ask themselves the ‘surprise question’ (whether they would be surprised if this patient died in the next twelve months and, if so, they are treated as in an end-of-life phase). The term has been given additional currency in the UK because it is used in association with the requirements of the Mental Capacity Act 2005 to take decisions on behalf of people who lack the mental capacity to make their own decisions, both in general and on agreeing to or refusing medical treatment. The American system allows the appointment of proxies to take decisions on your behalf; the British system allows you to complete official documents registered through the Office of the Public Guardian to appoint a friend or relative do this for money and separately for care matters. This is quite expensive and complicated, and it takes a long time.

Link to the Office of the Public Guardian.

Because of the provisions of the MCA, acp has extended its reach, because if you are employed to care for people who do not have capacity, it is your job to assess continuously their capacity to make decisions and to help them maintain and develop that capacity. So in residential care for older people, particularly those with dementia, advance care planning is a much more general process, involving helping people to decide how they want to live in a care home. You can see this represented in a good Advance Care Planning website, which is less concerned with end-of-life care decision-making, and represents a broader approach to acp.

Link to the care homes Advance Care Planning website.

The end-of-life care world and its literature, however, is still stuck with mainly missing this whole care homes acp industry, although there is some overlapping research, and guidance sometimes extends more broadly into care decisions. Part of the problem is the healthcare bias of the people working in end-of-life care and their general ignorance of social care.

A good summary of the basic  evidence about  acp in the palliative care field (written for non-specialist nurses by leading authorities) is contained in the St Christopher’s Hospice End of Life Journal: this is an internet journal that you can access free, but you have to register. Link to the article: Advance care planning: evidence and implications for practice

Another complication is the Scottish enthusiasm for anticipatory care planning, where there is very good guidance, and this also is more concerned with planning throughout the care career.

Link to the 2010 Scottish government website on anticipatory care planning.

Link to Healthier Scotland (simpler) guidelines for anticipatory care planning

Links to other guidelines:

Link to National End of Life Care Programme guidance on various aspects of advance care planning as part of the assessment stage of working with patients.

Link to SCIE, Department of Health and Help the Hospices Guide on Advance Decisions, referencing the Mental Capacity Act 2005 (2008 publication) Although a bit long in the tooth, this guide has the advantage that it specifically points up the requirements of the Mental Capacity Act, although be warned that there are a lot of legal developments on mental capacity, so it’s a bit out of date on the law. For professional practice, though, it’s still useful.

Link to recently-published tips for general practitioners (family doctors) from the Department of Health. As it’s for busy GPs, it’s very brief and explains things clearly from a community healthcare perspective.

Written by Malcolm Payne

24 January 2013 at 11:45 am

American audio case study on advance care planning for end-of-life care

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You might find this audio case study of advance care planning for end-of-life care in the USA useful. It is about Michele Tripi and her husband: she has multiple sclerosis (technical term: ALS, although really this covers a range of conditions; it also mentions Lou Gehrig’s disease; this is a popular American term for multiple sclerosis;  Gehrig was a sports star who had the condition and brought it to public notice). It covers some of the worries about making advance decisions to refuse medical treatment and what might go wrong.

Link to the audio case study.

It also provides useful links to the American Bar Association website on ageing and the law with a series of toolkits on making decisions in the US, and useful guidelines from Cedars-Sinai, a well-regarded US non-profit healthcare service.

My next post looks more broadly at advance care planning and has links to British guidance.

Written by Malcolm Payne

24 January 2013 at 11:06 am

Leave your own eulogy

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130114 My own eulogyAn interesting American website which allows you to record your own eulogy for your funeral (including pics and videos) so your relatives don’t have to work it out for themselves.

And you can tell the world how wonderful you were.

It also allows you to leave private messages, so you can slag off the relatives you don’t like.

Link to the website.

No doubt there are British or European equivalents, but this actually is presented fairly sensibly. It’s an example of how memorialisation is really important to many people. For social workers, it might be a useful way of getting people into a bit of advance planning for an important aspect of bereavement care

Written by Malcolm Payne

23 January 2013 at 11:41 am

It is not wilful neglect under the Mental Capacity Act if you are respecting someone’s autonomy

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130114 MCA legal caseA recent legal case sheds light on the crime of ‘wilful neglect’ in caring for an adult. S44 Mental Capacity Act 2005 makes it an offence for someone who has a duty of care for someone else, for example someone who is disabled or an older person with dementia, to neglect them wilfully.

The manager of a care home was convicted of wilful neglect of a mentally ill woman who was found very ill-kempt in her room in a care home. The care home said that they had left her in a poor state out of respect for her autonomy. The mentally ill woman was capable of making her own decisions in many respects, and the care home manager was motivated by giving her the greatest possible autonomy. She may have got it wrong in some aspects of the care, but because of this motivation, her actions were not wilful neglect.

The judge makes the point that before the MCA the law had a sharp dividing line: either you had mental capacity and therefore nobody could interfere, or you did not have capacity, in which case everything you did was taken over. Now, however, the law is more flexible. It says that carers may take over where there is incapacity, but where the capacity of the person being cared for is variable, there is leeway: where you are letting them make their own decisions autonomously, neglect is not always wilful.

Link to the case report.

Written by Malcolm Payne

22 January 2013 at 11:28 am

Whistleblowing about private providers will be discouraged in the new privatising NHS

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130114 WhistleblowingRegular readers of my blogs will know of my enthusiasm for the publications of the House of Commons Library, which give independent guidance to MPs in all sorts of things, but often it is aimed at situations where they are trying to help their constiutents. There’s a recent very useful example on whistleblowing in the NHS. You can download it from the Parliament website.

Link to Parliament website page.

This makes it very clear that the NHS is supposed to support its staff in raising issues about patient care and organisational problems, and it covers the law according to the Public Interest Disclosure Act 1998, and various statutory guides and legal developments, all with links on the internet. Aren’t MPs lucky to have this service, and isn’t it good we get access to it too?

One useful point it makes is the difference between allegations and disclosures. Staff are protected from being persecuted by their employers if they disclose information, but not if they make allegations. Here is a quotation, in the publication, from a Tolley’s employment law guide discussion of a case that describes the difference (an EAT is an Employment Appeal Tribunal):

…The EAT held that there was a distinction between communicating “information” (which is protected) and making an “allegation” which does not convey facts…which is not protected…The distinction is well illustrated by an example given in Mrs Justice Slade’s judgment in relation to the state of a hospital. To say “health and safety requirements are not being complied with” is an unprotected allegation. To say “the wards of the hospital have not been cleaned for two weeks and sharps were left lying around” is conveying “information” and is protected.

You might ask why responsible employers would not want to have this kind of information given to them so that they can act. One of the answers is the assumption that employees are there to do what the management tells them, not what is good for the people that they serve. This attitude has been encouraged by the ‘new public management’ or managerialism that has been rife over the past twenty years. This says that managing effectively is more important than professional responsibilities or good service, and disclosing information, particularly if it is likely to make the organisation liable for damages for neglect or worse, is anathema to the manager’s right to manage: how can you manage people if they have the right to let out all the secrets of your organisation?

This kind of attitude has infected the NHS from the private sector, where loyalty to your employer is paramount. A very experienced nurse friend was recently forced to work for a private medical practice because the NHS would not give her flexible enough work to enable her to care for her children. Faced with a patient worried about whether the treatment was working for her, she worked through the various ways in which the patient could raise her concerns, only to be told by the doctor that they didn’t want any of that NHS nonsense about patients’ rights here. We can see this kind of attitude in the reaction of some of the private clinics to the pip breast implants disaster.

We all need to be concerned about this, because since a lot of the NHS is going to be contracted out to private suppliers in the near future, the rights to whistle-blow over bad patient care is going to disappear. I can imagine the government would say that the right will still be there, but the reality will be that the pressure from employers not to raise any concerns about care standards will increase. And what will NHS employees do, faced with concerns about the people they are contracting with? Not a lot, if my experience of how they deal with unsavoury or just insipid care homes at the moment is anything to go by. Increasingly, the difficulties of contracted private providers will be ‘commercially confidential’ and there will be pressure not to disclose information which might be against the interests of private providers to the NHS.

Another weakness of this guide is its focus on the NHS, rather than health and social care. Really whistleblowing about healthcare should be possible from social care and vice versa; the separation of the services means that it’s not clear that you are protected if you disclose information about the other.

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Thinking about ‘last words’ can be just as important as thinking about memorialisation.

Written by Malcolm Payne

18 January 2013 at 1:35 pm